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Author Topic: Going to see Dr. Fulkerson; I am freaking out  (Read 1145 times)

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Offline KatieO

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Going to see Dr. Fulkerson; I am freaking out
« on: May 09, 2006, 06:46:01 PM »
Hey all,
With the encouragement of a couple of you to keep at my GP, my GP actually spoke to Dr. Fulkerson on the phone today. He said he was really nice and I should go ahead and make an appointment. I am waiting for a call back from his office. I was so nervous that I am not positive I left my phone number correctly.
I have patella baja. I am out of work because of pain and limitations. I can do almost nothing physical. Seeing Dr. Fulkerson feels like a really great opportunity but every time I go to a new big doctor (though never this big) I wind myself into a knot with expectations... hope makes me crazy. If he wants to do a TTT, the surgery itself sounds pretty hairy and the success rate doesn't sound so great, at least in the long run. Maybe he will have something else to suggest. I know it is really, really good that I am going to see him, but I am so damn scared. What if he can't do anything? Is that the end of the road? Is this as good as it gets?
Anyone who has actually seen Dr. Fulkerson, what is he like? How do I not freak between now and when I see him? sigh....
KatieO
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline bikersmurf

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Re: Going to see Dr. Fulkerson; I am freaking out
« Reply #1 on: May 10, 2006, 02:17:55 AM »
Hey!
Although I have never seen this man I can say take deep breaths and try to relax. There is nothing wrong with getting your hopes up, but try not to over do it. Chances are you are getting yourself worked up for nothing. Until then think of questions you might want to ask and do some research on what you have. surf and find out if there are studies going on or new procedures. Take some time to yourself and pamper your self. Remember you are taking control of this by going to this guy and be confidint in knowing you are in charge of your knee and have a choice in the types of repairs for you. I will be thinking about you and know you can do it.
BS :D
Motorcycle accident(open patella shattered)
8-05 reconstruction surgery wires pins, crown and figure eight , FEb 06, had bad fall and damaged knee and hardware. May 5 06 op to remove hardware and repair tissue, quad and nerve damage. Recovering!!

Offline Cari

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Re: Going to see Dr. Fulkerson; I am freaking out
« Reply #2 on: May 10, 2006, 04:39:32 AM »
I just wanted to let you know that I had a Fulkerson TTT on 11/30/99 and now 6 1/2 years later my knee is still GREAT, pain free and stable so just know there ARE success cases when the TTT is done by a Dr who is very experienced and skilled in doing them.

Good Luck

Cari
open lateral release 10/85, various scopes 1994-1998 for debridement, medial release 11/98,  TTT(Fulkerson)& lateral release 11/30/99, screw removal 6/27/00, tibial repair 2/13/01, dx RSD 6/25/01

Offline Janet

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Re: Going to see Dr. Fulkerson; I am freaking out
« Reply #3 on: May 10, 2006, 02:45:38 PM »
Katie:

That is great news! I'm glad you will be seeing such a great doctor.

I know exactly what you mean about getting your hopes up. I was there...several times...before I finally found the doctor who could help me. It was emotionally draining. I don't think it would be too much to say it felt like my life depended on that appointment. Not literally, of course, but definitely my quality of life. Anyway, hope is wonderful, wonderful thing!

Because you will be nervous at your appointment, you need to go in well prepared. Start now making a list of everything you want to make sure he knows about your knee and every question you can think to ask. Then before your appointment, put all your notes into some kind of order. Start giving information and asking questions right away when he is examining your knee. I've found that I can get (and give) more information if I start in right away than if I wait until the examination is over. Then I might pull out my written questions to make sure I haven't forgotten anything.

I hope you don't have to wait too long for an appointment. Keep us posted.

Janet
Torn quad tendon repair & VMO advancement 4/99, MUA with LOA 10/99, Patella baja and arthrofibrosis, LR & medial release & LOA 5/01, LOA & chondroplasty 6/03,TKR on 11/06, MUA 12/06. From perfect knees to a TKR in 7 years, all from a fall on a wet floor...and early undiagnosed scar tissue.

Offline KatieO

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Re: Going to see Dr. Fulkerson; I am freaking out
« Reply #4 on: May 10, 2006, 05:04:45 PM »
Dear BS, Cari and Janet,
It is such a huge help to hear from you guys. I need this support from people who have been there! Yes, hope is wonderful and terrible and necessary. Janet, I sure know the feeling of this being a pivitol moment and it is hard to not get worked up about that. It is so so hard to live in constant pain and fear of more pain (do I do this or that or will it cause more pain? always having to measure how what I am doing and not doing, every single thing,affects the pain). The hope that this could be the appointment that turns around this 8 year nightmare is pretty powerful! Cari, it is huge to hear that you are well and painfree after YEARS. That is a huge inspiration.  I have started my list of questions and will do my research. That's a great thought to start right off with questions and comments during the exam.
I asked my GP, who had actually spoken to him, what he sounded like. My doc wrote back: He really sounded nice! Compassionate, understanding and knowledgable.
I go on Wednesday June 7: four weeks from today.
It means so much to have you guys holding my hands.
KatieO
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline bikersmurf

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Re: Going to see Dr. Fulkerson; I am freaking out
« Reply #5 on: May 11, 2006, 03:31:51 AM »
Hey There!
 I am so glad to hear you with more pep in step so to speak. I know things are rough emotionaly and phyisicaly right now and yes we all have more time with it, but hope is the thing and having someone or people to vent, talk to or just know how you are feeling is the key. alot of here are so simular in our emotions that we tend to forget about ourselves for awhile and care for eachother. Preparing yourself and having the more information you can get helps in two waays, knowing what is going on, caring for yourself and not being so lost on your appiontments with there technical talk. Letting your OS know you are well informed or very concerned or very knowledgable is letting him or her know you mean buisness and will not just be pushed aside. The only thing I caution you about is letting it rule you. don't forget there are other things going on around you and do thihngs for yourself and others. Being injured sometimes takes up all your time and you tend to forget there is still a life going on out there. Include yourself in it as much as you can. I know you can do it.
Bs
Motorcycle accident(open patella shattered)
8-05 reconstruction surgery wires pins, crown and figure eight , FEb 06, had bad fall and damaged knee and hardware. May 5 06 op to remove hardware and repair tissue, quad and nerve damage. Recovering!!

Offline KatieO

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Re: Going to see Dr. Fulkerson; I am freaking out
« Reply #6 on: May 11, 2006, 03:19:12 PM »
Hey BS (and all),
Roller coaster and balancing act. Isn't that what we all go through? I do feel like I am doing ok, on the whole. I have been out of work about 3 months now. That can be pretty lonely, staring at my walls and myself, while my friends have busy lives with work and kids and all (my kids are out of the house; though my 18 year old came home yesterday for a little while). I think I have moved through the shock of not working to really starting to breathe and take care of myself better than I ever have. Pilates and yoga and walking have really helped, even if it hurts my knee. It is worth it.

I will carefully prepare for seeing Dr. Fulkerson. I admit that I get a little lost when trying to look things up, especially about actually conditions and surgeries. They start to blur together. What is a TTT actually like, for instance? I know in general terms what the surgery is, but not what happens. I just know that I can't avoid the emotional roller coaster. Yes, there is huge life and energy in HOPE but getting one's hopes up is so dangerous!!!

I have a wonderful pain management therapist. I see him today. Yay. Last week we did wonderful work using EMDR on trying to make the despair not so deep and dark. Despair is something we all live with but I need it to not be so dark that there isn't room for hope and vitality, too. I am really working on vitality.

The other really hard thing is my boyfriend's emotions. We have been together for 3 years and love each other to pieces. We live an hour apart so only see each other on Saturdays. It makes communication hard, and touching, harder! My pain is his pain. He goes through his own roller coaster. He wants to see me be free of pain and wants to be able to DO things with me again, wonderful fun things. He hasn't seen his brother for a long time (brother doesn't travel much because HIS partner has health issues) and since it is an 8 hour drive, I can't go with him. I have never met him. This hurts me. We both have so much at stake, hoping for that "normal" life, that it just churns up emotions. He keeps things to himself and I blab about it. We do talk and cry some but I wish it didn't hurt him so much. :-[  I don't know how to be the most supportive of him especially when it scares him to go to such painful places.

So,coping is good. Seeing a big name doc is good. Support systems are very good, too.
KatieO
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin

Offline Cari

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Re: Going to see Dr. Fulkerson; I am freaking out
« Reply #7 on: May 16, 2006, 05:48:22 PM »
Katie,

There are many diaries on the site from people who have had TTT's and some even describe the procedure itself and what it is suppose to accomplish. Just do a search on the site for TTT or Fulkerson and you should find the information.

Good Luck !

Cari
open lateral release 10/85, various scopes 1994-1998 for debridement, medial release 11/98,  TTT(Fulkerson)& lateral release 11/30/99, screw removal 6/27/00, tibial repair 2/13/01, dx RSD 6/25/01

Offline KatieO

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Re: Going to see Dr. Fulkerson; I am freaking out
« Reply #8 on: May 16, 2006, 06:08:49 PM »
Hi Cari,
I am reading like crazy all over the site. It is quite extraordinary how much valuable information and stories are all here for the reading. One concern I have is that Dr. F. will want to do surgery but not do it because I used to have RSD. I know I don't have it anymore. I am terribly sorry to see that you do. How bad is it? Have you encountered OS who won't touch you now for fear of exaserbating the RSD? How are you doing?
Katie
5/98 twisting injury
10/98 ACL partial tear repair/ and RSD
10/01 ACL reconstruction w/allograft
7/03 LR
1/06 diagnosed with patella baja
7/5 open knee surgery for IPCS
Life shrinks or expands in proportion to one's courage...Anais Nin